UNDER THE UMBRELLA – The challenges of proving what we know —By Matthew Zielske
Each of us is a natural researcher. From the moment we are born we begin asking questions about the space around us, and watching other people as they move through the world. Being curious about the world is an opportunity to learn to how to avoid mistakes, improve on something we are doing, or find patterns that can explain why things happen in a certain way. We accomplish this by observing and asking questions about why and how things work. This curiosity and inquisitiveness is the foundation of research and rigorous inquiry.
I’m learning the hard way that engaging in research is like Sisyphus pushing the bolder up the hill. At the end of the difficult and exhausting road to earn my Master’s in Communications degree I had two choices. 1) I could take comprehensive exams that are long form essays which I verbally defend. Or 2) I could write a Master’s thesis that would require approval from the institutional review board, intense data collection, a lot of sleepless nights and ultimately a verbal defense in front of a committee.
There are pros and cons for choosing either, and one isn’t necessarily better than the other. I chose option 2, and although it’s been incredibly frustrating at times, with each interview I carry out I’m reminded why I chose this path in the first place.
When I embarked on this journey I chose to look at connections between knowledge, communication and HCV regarding the success, or willingness, to access medical care. Throughout the process I’ve sat with many people who are living with hepatitis C who didn’t know the ways that HCV can be transmitted, or that there is a cure, and most of whom haven’t accessed healthcare.
As a communication scholar, I am interested in the pathways of how information is delivered and what barriers may be present to accessing healthcare from lack of information, poor communication or miscommunication.
Although my research isn’t finished quite yet, I can share some non identifying, anecdotal and unofficial observations about HCV and access to education that I’m noticing. One of the questions I ask during the research session is, in the opinion of the participant, what types of places that currently don’t have HCV education or information should have them.
Some of the responses I’ve gotten are:
- Post offices
- Grocery stores
- Bus stops
- Public libraries
Some of these may surprise you and others may not. For me, the take away is to realize that the places we think of having HCV education is too narrow. Part of reducing, or erasing, the stigma associated with HCV is accomplished by increasing awareness of, and access to, relevant education and information.
The conversations I’ve had with people when they’ve agreed to sit down with me are fun, insightful and at times frustrating and disheartening. There are a lot of challenges that you encounter when carrying out research with a stigmatized or marginalized population, especially if they are affected by a stigmatized illness.
Challenges such as an unwillingness to be audio recorded despite the utmost assurance of confidentiality (I keep all audio recorded interviews, and research data, on an encrypted hard drive at my home that requires two unique passwords to access.), fear of speaking about how or when they contracted HCV, uncertainty of who I am, or what I’m going to use the information for, and a busy work and home schedule that doesn’t always allow someone to take 90 minutes and talk with me.
A good portion of the people who have completed a research session with me have noted they only did so because they recognized my name.
Someone having a history of substance use, or a bad experience when sharing their HCV status, are common reasons for being hesitant to “go on the record” with me or anyone.
When folks did agree to sit down with me, a few common things I’ve heard regarding HCV education and healthcare are:
- They are often treated like they are “stupid.”
- When their history of substance use is discovered they are treated differently in terms of body language and nonverbal communication.
- They are often sent to many different physicians or health centers for different types of tests (e.g. A RNA confirmatory at one place, a PCR/Viral Load or Genotype test at another).
- Many give up trying to access care because the barriers or “hoops” they have to jump through discourage and exhaust their willingness to improve their health.
- They were very careful about who they disclosed their status to because HCV is often associated with injection drug use, which carries stigma all its own.
Many of these conversations discourage and frustrate me. Being made to feel “stupid” or ashamed is unacceptable. And adding barriers to being able to get a confirmatory test, or genotype test, because of whatever reasons (insurance, organizational capacity, poor communication, etc.) is a weak excuse at best and at worst is irresponsible, lazy and I would argue unethical. Even the most dedicated and informed people will become discouraged and give up if they continually meet resistance, poor attitudes, cold shoulders and condescension.
There is good news though. I have also heard a handful of stories from people giving praise and credit to doctors and healthcare providers who took the time to sit down and clearly explain HCV to them. Overwhelmingly, people say that these positive experiences encourage and motivate them to improve their health and seek treatment.
A good measure of successful research is often publication and conference presentation, but more than that my hopes with this research is to illuminate common struggles regarding HCV, education and treatment access as they exist in Southern Indiana, while also providing recommendations that are generated by the affected population so that we can improve treatment access, uptake and overall health outcomes.
Matthew Zielske currently works as a HIV/HCV special populations prevention specialist at an HIV services organization. He utilizes a harm reduction model in his work with the substance use population focusing pointedly on persons who inject drugs. He is currently conducting research on Health Literacy and hepatitis C for his Master’s Thesis in Communications. www.umbrellaway.org.
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